Here is my latest essay on Psych Central. It has a content warning for death and dying.
I knew a time when I didn’t consider turning a cartwheel a second thought – my arms outstretched my legs in a V and during those times falling wasn’t a concern. There was also climbing up on a horse and riding it as fast as it would carry me. I bent easily. I twisted with ease. Not so much grace, but flexibility. My body. My wonderful, beautiful, strong, capable, reliable body. Not everyone has a body that moves through the world without a struggle. I did, though, and now it is deteriorating.
My brother once said that Parkinson’s (which his partner has) is a series of letting go – saying good-bye to tasks and skills you once could perform easily and without effort. I am letting go. No cartwheels. No mindless walking where the tree trunks that have pushed up a concrete block in the sidewalk don’t make me slow down. I need a steady pace. No dashing from the shower without the fear of falling. No leaving puddles of water on the bathroom floor.
This body that for over thirty years was ready and waiting to bring a life into this world has even said enough to that as menopause begins to set in. There will be no children feeding on these breasts. No eggs. No build up of the uterine wall and then the shedding of that miraculous lining.
I grow older by the day. My body has become more fragile, less limber. I see some eighty-year-olds running marathons, that will not be me. For the past eight weeks, I have been bedridden because of an injury to my back and during that time I have dreamt of the lack of awareness I used to possess where my limbs and spine are concerned. I have drifted off to sleep imagining that I was floating in water, free from the aches and pains and weight of my out-of-shape body.
I’m not a person filled with jealousy. I rarely feel envy, but to watch the free-flowing movements of abled bodied twenty-year-olds brings a sting of missed opportunity and the lack of gratefulness and full appreciation of what this marvelous home I walk in could once do.
I know that aging brings with it pearls – treasures of a different kind: memories of how things used to be like life before the Internet, before cell phones, before selfies and if you are fortunate enough, age carries with it more wisdom and an eye and heart for what is truly beautiful.
As I let go of physical confidence and strenuous athletics, I keep my heart and mind open for the freedom to visit the past and soak up all that is precious there; grandparents who have passed on, friends who were taken much too young. I can entertain my young self and accept that she was right about some things, especially that the world is magic and she has mystical powers.
Content Warning: Language
I walk downtown to a busy Starbucks to wait for my husband to finish his work day so we can walk home together. On my trip to the coffee shop and while I am sitting at a table, I see at least a dozen homeless people. Some of these people are talking to voices only they can hear, waving their arms and cursing at no one in particular. I want to look away but I can’t.
While I sip my coffee, I stare at one woman who appears to be in her sixties. She is wearing a wool coat and gloves on a warm Southern California day. She walks up one side of the sidewalk and then back again, repeating her steps over and over. She looks as if she is pacing. She begins to yell, “Fuck you!” as people pass her. “Fuck you!” She screams again and again.
I don’t know if she is directing her words at the people on the street passing her or if she is yelling at a voice in her mind. I am almost certain she and I share the same diagnosis. Schizophrenia is not hard to recognize when you have lived with it intimately for over two decades. I don’t approach her. I sit, watching, thinking to myself…no, knowing, that she could be me- a medication that didn’t work, a divorce, the death of a parent, so many things could have placed me in her shoes on this street, yelling.
In contrast, I have a nice condo, in a good neighborhood, and a husband with a job. I try to contribute when I can by writing essays, articles, blog posts. I wouldn’t say life is easy for me, but in comparison to this woman before me?
I work hard for the level of functioning I enjoy. I take my medications with three hundred calories of food twice daily. I try to keep my weight down to avoid severe side effects like diabetes and high cholesterol. I keep pills with me all the time for the break-through of unexpected symptoms. I battle alongside my husband to control paranoia, lack of motivation and anxiety.
I can’t help but think, with the right medication, the right support, and if the opportunities for treatment existed, a network of support was available, would this woman before me fight as hard as I do? I believe she would. I think most people with schizophrenia would. Voices can be terrifying and torturous. Stopping the assault of voices on the mind is like salvation of the religious kind. The silence seems so life altering, in fact, it is life altering.
I want to do something for my fellow-sufferer out in the street, but I know she needs more than a phone number, a five dollar bill, or anything else that I could offer, except understanding and compassion. I have those two things in abundance as I watch her continue to yell, “Fuck you!” and point her boney arms in random directions. She could be cursing me above all others because I’ve been so close to where she stands and still can’t figure out the right thing to do.
*I wrote this back in November for The Mighty and even though they accepted it, it must have been cut because it never showed up there. I am posting it here to give it a home.
People with severe mental illnesses frequently are portrayed as dangerous killers, or they are portrayed as the harmless “fools” or “idiots” like in the Fisher King. There is one nice thing to say about Dr. Phil’s show that aired November 18th, 2016. The nicest thing I can say is that he didn’t go for either of those stereotypes that most movies, television shows and stories portray; Shelley Duvall did not come across as dangerous or a killer or the happy, go lucky “innocent.” She was, however, portrayed in a way that made light of psychotic thoughts and features during a time in her life when she is in deep need of understanding and care.
The show took the path of sensationalism and did a disservice to all those who have a mental illness. Duvall, best known for her role alongside Jack Nicholson in the Shining was obviously suffering from symptoms of a severe mental illness. I’m not a doctor, but her symptoms mirror many people (myself included) who have schizophrenia, schizoaffective disorder, or bipolar psychosis. If I had to guess, I would say that Duvall was actively psychotic based on my experiences with the condition (I have been psychotic numerous times and her thought pattern, paranoia, etc. closely resemble what I went through).
I am disappointed and angry that McGraw didn’t take the high road and interview someone with a severe mental illness who is an advocate and could have gotten through an interview without falling into some of the most serious symptoms displayed by people with schizophrenia or other disorders. For instance, I suffer from symptoms every day but could have talked my way through an interview without disclosing any delusions, hallucinations or conspiracy theories. The same was not true of Duvall. Duvall mentioned a device implanted in her leg that causes her to worry. She also said that Robin Williams, who she acted within the movie, Popeye, was not dead (Williams committed suicide in 2014) but was “shape shifting.” And she claimed that the Sheriff of Nottingham was out to get her, and frequently mentioned people trying to hurt her in bizarre ways.
I know the things I wrote in the last few sentences seem kind of eccentric, harmless, and maybe even fun or goofy, but they are symptoms of a serious illness, and there is nothing harmless or humorous about them. If Duvall is psychotic, she may also be hearing voices (during the interview she mentioned a man that is hurting her that may very well be a voice that she hears). Hearing voices is a phenomenon that can be upbeat one moment and terrify the next; it can be extremely uncomfortable to those who experience it. At a minimum, Duvall deserves our respect, compassion and empathy and McGraw made her more of an object of sensationalized quirkiness than a woman who needs intervention, care, and long-term treatment.
Not only did the Dr. Phil show harm advocacy efforts towards giving a balanced and fair view of mental illnesses, but it may also have harmed Duvall as well. If Duvall can get medications that clear up her symptoms or at least make them manageable (knowing the difference between reality and delusions) then she may very well be embarrassed or shamed by that interview. In her vulnerable state (which should never have been made public) she may have opened herself up in ways that she normally wouldn’t have, and that could cause her further suffering.
Like all marginalized groups who suffer from popular stereotypes, mentally ill people long to be seen as we are and not as caricatures of our symptoms, sensationalistic representations of our illnesses, or in a case of extremes. For many of us, we look a lot like everyone else when we have proper treatment, but darn, that just isn’t as interesting and doesn’t sell advertising.
Yesterday I wrote a blog post about what schizophrenia is and what it is not. This post is similar but rather than look at the personal (stories about me) I am looking at how people view severe mental illness on a national level.
This election cycle was difficult for many people to get through. The things that we had to listen to on the nightly news were vulgar, intolerant and upsetting in so many ways. We experienced Islamophobia, xenophobia, homophobia, misogyny, mocking of the disabled, and then those of us who have a mental illness experienced something else: we experienced more insults and misunderstanding than I have encountered in the twenty plus years since I received a diagnosis.
Insulting language about mental illness was everywhere I looked. It filled up my Facebook feed: lunatic, unhinged, crazy, bat shit crazy, insane. It was in mainstream newspapers and used by pundits on the nightly news. Derogatory language about mental illness had become the norm for those who normally fight for marginalized people.
Seeing so much reference in a negative way about mental illness was startling and painful enough, but the reasons why people were using that language was even more alarming. People were confusing intolerance, hate speech, aggression, bigotry, misogyny, sexual assault and all manner of other disturbing things with symptoms of mental illness. None of those things have anything to do with mental illness.
I have symptoms like, depression, anxiety, auditory hallucinations, tactile hallucinations, visual hallucinations, social anxiety, lack of motivation, and isolating socially to name a few. As you can see, none of the things I mentioned as symptoms have to do with discriminating against, disliking, or being intolerant of other people. Also, none of them have to do with aggression.
What people did, millions of people, during this election is make being a racist, sexist, etc. into the definition of mentally ill and those things are not connected. This climate of inappropriate and inaccurate cause and effect impacted me so much I am only now able to write about it. Since the election, I have only seen this addressed once in an article on a news outlet like Huffington Post (I think that is where it was but I can’t be sure).
I felt as if all the social justice people completely abandoned the mentally ill and the nation decided that whatever unfavorable characteristic someone displayed it was due to mental illness. It was as if the title mental illness had become a dumping ground for all the things people find distasteful in others. We became not the trash collectors, but the trash.
Since so few people recognized that this was happening, and did nothing to change their language, I am sure that we will see much more of this over the next four years. The progress the mental health community achieved over the past few years in educating people about mental illness may very well be eroded by the current political climate. I hope the damage is not severe. Those of us who have once again been characterized by the media and the public as “bad” people will suffer the consequences of this latest wave of ignorance and misunderstanding.
It’s Monday. I spent a busy weekend with my husband and had relatively few symptoms. In fact, other than some fear/paranoia, about the use of an ATM I was symptom-free. Because I had so few symptoms, I wondered, not for the first time, what part of me is my illness and what part of me is my character or personality?
In times when I am not psychotic or having a panic attack, I think what people see from me mostly is my personality and not my illness (even though they may think everything is my illness). Several things happened this weekend that made me think, even without schizophrenia, I am an imperfect person.
My husband and I went to a festive open house on Friday night. There were many galleries open, and people were ice skating to holiday music. A three-story Christmas tree lit up the courtyard, and we were in search of pumpkin pie. I love pumpkin pie and I didn’t have any for Thanksgiving, so I wanted to make sure I had a piece before it disappears from menus. I was walking around the corner of a sidewalk, and six young men came in the opposite direction, one of the men slammed into me with half of his body. I yelled, “OWWWWWW!” He didn’t stop. He didn’t look back. He didn’t say excuse me, or that he was sorry.” In my anger, I yelled, “F****er!” Immediately after I yelled it, I regretted it, not because I was worried about his feelings but because I was worried that the six young men might decide to start a fight with my husband. Obviously, there are times, when my anger gets the best of me, and I don’t have the best judgment. This incident is an example of my personality and not my schizophrenia, and I find it to be something I should work on.
On Saturday night my husband and I went to a holiday celebration that attracts over 350,000 people over two days. It was extremely crowded. There were times when people would stop in the path of where others were walking, and I would get frustrated. During one such time, I said quite loudly, “Seriously?” And a woman looked back at me with such a hateful look. When I got past the people stopped, I saw a person in a wheelchair. I felt terrible because it must be so difficult to want to attend a holiday function that is not easily accessible for the disabled. Also, I never want a person in a wheelchair to feel like they are a burden in any way. I felt bad about my impatience. This incident is again part of my personality and not my illness.
There were other things that happened over the weekend that I felt good about and they too have to do with my personality and not my illness. I let a young mother go in front of me in a long line in the restroom so her little girl wouldn’t have to wait any longer. I offered to share our table in a very busy outdoor beer garden with a couple that I saw walking toward the table at the same time we were, but I managed to get there first. The couple did share our table, and we had a nice conversation. We also told a group of young women we were leaving in advance so they could secure the table and not have to stand around.
I once read that in a relationship if you criticize your partner you need to say one thousand nice things to them to erase the impact of the harm you caused. I wonder if the same is true in the world: if we act negatively, hostile, impatiently or rudely to another person do we have to do one thousand nice things to set the world right again? I think maybe we do.
After this weekend’s events, I am going to be working on completing one thousand nine hundred and ninety-seven random acts of kindness to put the world right again, and it all has to do with my personality and not my illness. My illness isn’t to blame for everything; I am responsible for so much of what I think, say and do just like you.
Last year, around this time, I picked a word that I hoped would define 2016. I picked the word, “ATTEMPT.” It is written and posted on my wall in black and red ink on the left side of my computer. I have looked at it all year. It has not defined this year at all. I did, attempt to go to work several times. Remember the Amazon Prime Now job I landed and didn’t make it through the first day? There were others as well. Regarding employment, I guess I did attempt to become employed. I didn’t attempt much else, though.
One of my big goals for 2016 was to have an essay about something other than schizophrenia accepted to a literary magazine. Well, I was successful at reaching that goal. I had The Extraordinary Ordinary Death published in Angels Flight: literary west. The essay will be published again in a book by Brightly Press early in 2017.
I think much of this year I was distracted, nervous, concerned, and extremely anxious about the election. The campaign was horrible to watch as the country dove nose first into vulgarity, intolerance, and division. I hated it. I hated watching it, and the leftovers of it, along with the increase in hate crimes and hate speech, fake news, possible corruption, and scandals, has torn a hole in my heart that I am not sure will heal completely. If that hole does heal, the scar tissue it leaves will forever impact the way my pulse beats. Much of what I thought about America may not be true, and because I love this country so much that is like a loss or like surgery, a removal of something dear. I want a breather from bad news, but it seems to come at me daily.
Because my word for 2016 was so inaccurate in defining the year, I wasn’t going to choose a word for 2017, but then I decided to give it one more try. At first, I thought I would choose the word, “RESIST.” I felt like I could work toward resisting intolerance, hate, division, despair and I felt like I could try my hardest to resist my symptoms of schizophrenia. When I say the word, it hits my ear as negative, though. I feel as if the word will make me feel as if I am constantly fighting. I don’t want to spend 2017 pushing against everything, some things, yes, but not everything.
I thought about choosing the word, “HOPE.” Hope is a word that makes me feel like the cliché: light at the end of the tunnel. It brings me thoughts that everything will eventually be okay. Hope is a good word, but I didn’t feel it would push me to act. I need 2017 to be a year of action. I need to do more. I need to work harder at advocacy. I need to work harder at my writing. I need to send more work out and write more letters to politicians and government officials. I would like to have even more of my writing that isn’t about schizophrenia published (this is important to me because it means I can define myself first as a writer not someone with schizophrenia).
For all of these reasons and much more, I am choosing the word, “ACT.” To act is what I hope for in 2017. Do you have a word for 2017? If not, will you join me in ACT(ing) out the steps that make your dreams possible? Let’s ACT out the best people we can be, today, tomorrow and all of 2017.
Currently, there is so much hatred being planned and executed in the world. We need an avalanche of kindness, compassion, and concern. Count me in among the ones to take the first step on the mountain that makes the snow become unsteady and start to shift.
Thanksgiving is over. Christmas, Hanukah, Kwanzaa and the New Year are right around the corner. We are in the midst of the holiday season, and this is the time I reach out more to strangers, smile more often at faces I don’t recognize, wish people well in almost every interaction, and buy coffee, meals, and presents for loved ones and strangers alike.
I love the holidays. I love the goodwill that is often shown to people in public and in private. This year, the election has left a country divided. Many people feel extreme anger, fear, and uncertainty about their future and the future of things they care about and love. There is no need to feel hopeless, though. Little actions done on a daily basis can change lives and change the world.
On Facebook, I announced that I was making an Advent calendar of kindness and cheer, and I asked people for suggestions. I know it is already December 2nd, but there are still many days left until Christmas to put these actions on your to-do list. I plan to write each of these things down, stick them in envelopes, shuffle the envelopes and then number them 1-25 (or 2-25 because we are starting a day late). I will open and complete one action each day until Christmas.
Here are highlights of some of the best suggestions I received:
Join me in spreading goodwill this holiday season. I’ll meet you where kindness and compassion live – let’s be neighbors.